To good to be true??

After years of going back and forth to the hospital i had laser surgery which had no affect at all on my symptoms.The hospital discharged me and said there was nothing else they could do. I felt so helpless that i had to accept that this would be my life.Unable to work as i would be calling in sick all the time. I feel constantly exhausted and sleepy.I am in pain 3 weeks out of the month and when i do get my period i wont leave the house for the first 3 days as it is so heavy and painful.

I made the decision to go for a private consultation i am lucky to have a very kind mum who offered to pay.

I couldn't believe the difference!! Finally i was speaking to someone who understood!!This IS NOT just bad period pain!!!

All the symptoms he described were exactly what i have been experiencing.

Some of the things he told me i can not believe.

He said that the laser surgery(which i believe alot of women with endo have)is useless!!!It removes the endo which is visible but endo goes alot deeper and this is what causes the pain.So really this surgery is a waste of time.

He told me about research that is being done in Canada and that the best way to deal with endo is to actually cut it out. The results they have found are that 90% of women experience no recurring symptoms!! and incases where the endo does return it is after 5 years.

Fertility can be returned to what it was before the endo.

So really he has said that this op could completely cure me.

Has anyone else had this op where they actually cut out the damage endo has done??

I would love to know the results.

As far as i knew there was no cure. Though no one has ever told me about this op before.

I hope i havent been filled with false hope.

8 Replies

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  • Hi Kimee, I have had my endo cut out though I wouldn't go as far as calling it a cure!

    I had a hysterectomy in Nov 2011 due to extensive endo with adhesions and scarring. The endo was cut out and despite the usual operation recovery I have felt much better. However, I do still suffer with some symptoms, can still feel some adhesions and my consultant has told me there is NO cure for endo, only control methods.

    This was my best option and so far so good! I have been advised that the endo will probably return within 5 years, when I will have to have further excision surgery. I am on HRT which increases the chances of it coming back early, but I feel it is worth the risk so I can have a better quality of life now. I have an active job and need to be as fit as possible with this condition, can't afford the menopausal symptoms like brittle bones. The hot flushes are bad enough!!

    Good luck in your search for treatment. Find a good surgeon and discuss what will suit you. I know I'm pleased I opted for excision as most of the posts I read about repeated surgery seem to involve less invasive methods.

    Best wishes and big hugs xx

  • Hi, I would be really interested to see how your surgery goes. I have been doing lots of research and excision does seem to be better that laser, whether someone could say cure though I am not sure! I am going to be asking to be referred to someone for excision so please post when you have had it done to say how you feel. There is also an op called radical excision which seems to be very good, there are posts on here about it, good luck x

  • Kimee

    Hi yes I have had total peritoneal excision (also referred to as radical excision). I am guessing you saw my surgeon (Mr Trehan :) ) , certainly sounds like him.

    I can tell you that I had stage 4 endo (on bowel, bladder, ligaments, pouch of douglas, endometrioma, diaphragm - resulting in a frozen pelvis and kinked bowel etc) (I wont go into great detail as I have several posts under other people's question re excision and whether a hysterectomy will be the cure etc) but I can happily confirm it was the best thing I could ever have done for myself. All done keyhole. I have been free of endo symptoms for past 17 months. I avoided a hysterectomy, kept my ovaries (had temporary ovarian suspension) and no need for HRT or pain-killers for anything other than a tension headache and mild prostaglandin normal type period ache occasionally. Once you have the treatments explained to you - it is hard to understand why ladies with advanced endo are still getting offered the solutions that they are.

    For advanced endo it needs advanced treatment. Why the heck don't these consultants who say there is nothing more they can do - I have even read of ladies referred to a pain clinic and who have been made to feel hopeless - refer you onwards to an endo consultant who CAN do more for you. It is nuts.

  • I had a phone call yesterday saying they have a cancellation on monday so I go in for my excision monday... I will let you know ladies :-)

  • All very best wishes for your op on monday Becky. x x

  • Good luck :)

  • Hi,

    Hope the op went well!! I have been doing some research into Mr Trehan and it definately sounds like he is an excellent surgeon!

    I am about to start a 6 month course of Prostap, and I am really worried about the side effects!

    I am 27 and have suffered since 13. I want a hystorectomy and have done since the age of 20! I feel as if I am not really invokved in my life as it seems to pass me by!! I am on so many painkillers just to get through the day!!

    I am interested in his excursion surgery it dounds like it has a good success rate without having to have everything removed!

    I would be grateful if you could let me know your experiences and whether you would recommend the surgery! I would also like to know how much this kind of treatment costs!

    Good luck and hope you feel well soon.

    J xxx

  • I live in wales so am seeing a private doctor in cardiff. His name is ANthony Griifiths. My op is booked for the 27th july, it cant come soon enough!I will definately post to let you know how it has gone!x

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